Wednesday, March 31, 2010

Cath Results

Lynnea is finished with her heart cath, and the procedure went went fine. The good news is that the aorta looks OK. The stent in her aorta needed ballooning, so it was ballooned open, and now it looks pretty good. The bad news is that she no longer has any flow through her left pulmonary veins. There was nothing left of the veins that could be ballooned open in any way. So, as we already knew from her lung profusion scan, there is no blood flow to her left lung. This was very discouraging, not really surprising, but very discouraging. I don't know what this means for any plan from here on out. The cardiology team will discuss it.

Tuesday, March 30, 2010

Heart Cath Tomorrow (Probably)

Lynnea had a good day today. She slept a good portion of the day, but she seems to have her days and nights mixed up right now, so this wasn't surprising. When she was awake, she was in a good mood, and she was very playful. The plan is for her to have a heart cath tomorrow at 11am (supposedly; technically we haven't heard a confirmation on that time, but that's the time that everyone expects it to happen), and we will move forward based on the cath results.

Monday, March 29, 2010

Working on a Plan

Dr. St. Louis was back today, so he had a chat with Dr. Gruenstein, and Dr. Gupta (the critical care team attending this week) to discuss a plan for Lynnea. The tentative plan is still to do another heart catherization sometime this week, but I still haven't heard a date/time. St. Louis would still like to attempt the aortopexy sometime soon as well. I spoke with Gruenstein and Gupta first, and then to St. Louis later in the day. Gruenstein and Gupta are not ready to completely give up on Lynnea, though they did recommend that Corey and I sit down and have a conversation about her code status and whether or not we still want her at full code status (meaning that if she codes, they will do everything humanly possible to keep her alive, regardless of quality of life), or if there would come a point when we would want them to just let her go. They also threw out the possibility of evaluating her for a transplant just so that we know if she would even be a candidate. St. Louis seems more optimistic about her situation than they did, and said that he's not ready to give up on her yet. He did suggest that Corey and I reconsider the possibility of getting her a trach, even as a short term solution so that she wouldn't need to have the breathing tube down her throat because, even if the aortopexy were to be completely successful, it would be at least two weeks after before she would be able to come off the ventilator, so this is something we should seriously take into consideration.

Sunday, March 28, 2010

Happy Birthday Ashlyn!

Today we celebrated Ashlyn's third birthday. It had been my personal goal to be home from the hospital before her birthday, but since that didn't happen, we had her birthday party at the hospital (this is two years in a row...if we keep this up, she's going to start thinking that her birthday party is supposed to be at the hospital every year). Family and a few of our close friends came to help us celebrate. Ashlyn seemed to enjoy herself, and I think overall had a really good birthday.

Lynnea's fever remained down today -- she's running a low grade fever now (100.3) but it is still much lower than it has been in a while, so this is good. There was mention this morning during rounds of possibly taking her to the cath lab for another heart catherization sometime this week. Nothing definite, but it is being talked about, and I think it would be a good idea. Other than that, nothing new with her today, and no other plans to speak of for now.

Saturday, March 27, 2010

Another Echocardiogram

I apologize for not updating the blog yesterday -- I was having difficulties logging in to Blogger. Anyway, Lynnea's day yesterday was not quite as difficult to the days prior. Her sedation was better, and her mood when she was awake was a little bit better. Yesterday they decided to stop her Zyprexa (the anti-psychotic medication she was on) because there is a very small chance that it could be contributing to her fevers. Today her fevers continued to be high, but it takes about 48 hours for Zyprexa to leave her system, so if it is a contributing factor, it would be too soon to notice any difference. This morning in rounds everyone agreed that it would be a good idea to do another echocardiogram since she is completely off from her Epinephrine drip (since yesterday evening) to see what her heart function looks like now that she's off from the Epi. I didn't get the full detailed results, but I was told that her tricuspid valve regurgitation is worse than it was before. Essentially, this means her heart function is worse than it was a week or two ago when they did her last echo. This is also the most likely reason that she is not tolerating her feeds (she's on primarily IV nutrition for the time being, though they are running her J-tube feeds at 6 mL's per hour). We still don't have any real plan for what will be done to address the issue of her heart failure, but this is at least partially due to Dr. St. Louis being out of town; I think he's supposed to be back on Tuesday, so everyone will discuss her situation then hopefully.

Thursday, March 25, 2010

Another Difficult Day

Today was very much like yesterday. Lynnea was awake and very crabby most of the day. She managed to kick out the IV in her foot that they put in last night after she had managed to kick out the one that she'd had in her foot before that. So, they had to start another IV, which she hated, as usual. She ran a fever much of the day. There still isn't any sort of real plan for where to go from here. None of the cultures that they've sent (over, and over, and over again) have come back positive, so there is still no explanation for her continuing fevers.

Wednesday, March 24, 2010

A Difficult Day

Lynnea was awake and very crabby all day today. Her sedation meds don't do anything anymore for her (I can't tell when she gets her extra bumps, they don't seem to phase her at all). She continually wanted me to pick her up today, which is still not an option, so she would get mad at me for not doing what she wanted me to do. She also decided to try to pull off her bandages over her incision site, and try to pull out her breathing tube, so we had to put a "no-no" on her arm again so that she couldn't reach these things to pull on them. She wasn't happy about that. With all of her kicking all day, she managed to ruin the peripheral IV that she had in her foot, so this evening she had to get a new one put in, which she hated. She also ran a fever all day today. She had another lung profusion scan this afternoon that showed 90% of her blood flow going to her right lung, 10% to her left, which is not much different than the last scan showed. There is still not plan for what/when to do next to her.

Tuesday, March 23, 2010

Not Much Change

Lynnea's fever spiked to 102.5 again today. Her white blood cell count and CRP both remain down, which is still good news. They are still holding off on her feeds for now. The general consensus seems to be that she's probably not tolerating them because she has severe edema (she's retaining a whole lot of fluid) due to heart failure. So, they are continuing to try to get her closer to her dry weight again, which would help a lot of things just work better. I don't know if they are going to start her on half feeds for now, or if they are thinking about putting her on TPN (IV nutrition); they will probably discuss it tomorrow. Nothing else new today.

Monday, March 22, 2010

No New Plan Yet

I was hopeful that we would have some sort of new plan today for Lynnea, but that's not the case. There was some vague talk during morning rounds about possibly doing surgery next week sometime, but nothing concrete. At some point she will also need another heart catherization, but there's no specific time frame for that either, but it will need to be done to help determine potential causes of her diastolic heart failure. She also spiked another fever today - 102.7 - so I don't know where that puts things. When she spiked, cultures were again sent - blood and urine (no sputum this time because that's been growing out the same stuff for weeks, so no one saw any need to culture it again right now). Her white blood cell count is still normal, and her CRP is down, which is a sign that the fevers are potentially not infection related after all. She also began gagging today, and her she's leaking around her feeding tube again, so her feeds were stopped until they can figure out why she doesn't seem to be tolerating them very well.

Sunday, March 21, 2010

Nothing New

Lynnea had another quiet day. Her temperature remained down, her blood pressures were OK. She handled a very slight decrease in one of her sedation medications without any major problems. Hopefully, if she continues to remain fever free overnight, they will come up with a plan for where to go from here tomorrow.

Saturday, March 20, 2010

A Quiet Day

Lynnea continues to remain fever free (at least by the current definition, which is 101), which is encouraging. Her blood pressures dropped a couple of times today, but were more stable today than yesterday. She remains on the same amount of Epi as yesterday. The discussion in morning rounds included the same concerns they have had over the past few days, mainly her heart function (specifically, her diastolic function - her right ventricle is very stiff and has a hard time filling effectively). There was nothing specific discussed about what might need to be done to help this in the long run, it's just an ongoing concern that everyone has. After rounds, Dr. St. Louis looked at Lynnea's incision and said it looks good. Overall, she had a quiet, uneventful day. She woke up and played a few times, and continues to enjoy watching her movies over and over again.

Friday, March 19, 2010


Lynnea did not spike a fever today, which is wonderful. She has continued to have difficulties with her blood pressures though. They continue to be lower than anyone would like them to be. She is back on a larger dose of Epi, and still continues to struggle to keep her pressures up. She was also put back on Milrinone again to help with her heart function. All of her antibiotics were stopped this morning.

This afternoon she was awake for a while, and was very playful. She enjoyed playing with her balloon, and watching Little Einsteins (that seems to be a running theme with her lately). Last night she fell asleep clutching her balloon tightly in her hand, and she held on to it for a few hours. It was very sweet.

Thursday, March 18, 2010

Semi-Stable Day

Lynnea remained fairly stable much of the day, though she seems to be having a tough time keeping her blood pressures up again; they have had to increase her epinephrine significantly compared to the amount she required before surgery yesterday, and she also needs occasional extra fluid boluses to keep her pressures up. She ran a low grade fever all day, and spiked as high as 101.8, at which point Tylenol was given. None of the cultures that were taken during surgery yesterday have come back with anything positive, so the plan now is to wait until tomorrow morning (giving the cultures 48 hours), and if nothing has come back positive, they will take her off from all of her antibiotics so that, if she really does have some sort of infection somewhere that is being partially suppressed by the antibiotics, they will be able to culture her blood, urine, and sputum with the hopes of getting a positive culture so that they can identify what sort of bacteria they are trying to fight.

Wednesday, March 17, 2010

Heart Surgery #7

This morning Lynnea underwent her seventh heart surgery. This time it was very short - she was taken to the OR at 7:42am, and was back in the PICU at 9:45am. Dr. St. Louis re-opened the incision in her chest, and looked for signs of infection, and/or any fluid that he could drain that might be a source of infection. He didn't find any. This is good news because the type of infection that everyone was afraid that she had would have been very, very bad for her, but this means that we still don't know why she has been running fevers for nearly six weeks. Ironically, since returning from the OR, her temp has been normal - 98.4. Hopefully it stays normal, and maybe she will improve enough so that she can have the aortopexy that she needs next.

Tuesday, March 16, 2010

Surgery in the Morning

Lynnea is still on the OR schedule for first case (7am) tomorrow, but she is not going for an aortopexy/lung decortication as planned. Instead, she is going for a chest exploration, to hopefully find the source of her infection and ongoing fevers. Dr. St. Louis will re-open her chest incision and look for signs of infection -- puss, inflammation, drainage, etc. Depending on what he finds, he may have to leave her chest open after the procedure. Hopefully, draining any extra fluid that may have collected will help clear up her infection. Her aortopexy is on hold until after the infection situation is resolved.

Monday, March 15, 2010

High Fever

Lynnea is technically on the OR schedule for Wednesday to have her aortopexy, but I am not sure if Dr. St. Louis will go forward with this considering that she again spiked a high fever today (102.6). He was not here today, so I assume he will make some sort of decision about it tomorrow. Because her fever curve has gotten progressively worse since they started taking her off some of her antibiotics, they have decided to put her back on the antibiotics. There is also some concern over a rash that she's had since early last week, and concern that she may be having some issues with the Heparin that she's on. In rounds this afternoon, there was much discussion about these issues (and a few others), and though no decisions were made, and nothing particularly useful was said in the end, I got the distinct feeling that everyone was very worried about all of these things, and just incredibly worried and discouraged about the way things are going for her in general.

Sunday, March 14, 2010

Unsure about Surgery on Tuesday

This morning Lynnea was awake again for a while, and in an OK mood for some of the time. She spent time again trying to get her oxymeter probe off from her foot, and constantly showing me that her hands are tied down and she wanted them untied (we keep them tied so that she doesn't pull out her breathing tube). She also watched some Sesame Street and seemed very happy when Elmo was on (Elmo is typically her favorite Sesame Street character).

She had been running a low-grade fever all day, but this afternoon she spiked as high as 102, and has remained at 102 since around 2:30pm. This makes it a bit unlikely that she will have surgery on Tuesday, but we won't know until Dr. St. Louis makes a final decision about it, probably tomorrow sometime. The only change for today was that they stopped another one of her antibiotics this morning.

Saturday, March 13, 2010

Fever, Again

Overnight last night the decision was made to give Lynnea a dose of steroids to see if this would bring her fevers down. This morning one of her antibiotics was stopped to see if that would change her fever curve at all. This afternoon she spiked a fever - 101.1, and then was given Tylenol, so we don't know exactly how high she actually spiked. We'll see how she does overnight tonight.

This morning Lynnea was awake, and even a little bit playful. I believe she may have smiled, and possibly even laughed at me a little bit when I was being silly with her and giving her kisses on her hand. It was hard to tell if she was actually smiling because of her breathing tube, but she kept giving me her hand asking for more kisses, and really seemed to enjoy herself. This was good to see. She also enjoyed watching one of her Little Einsteins DVDs, and was feeling feisty enough to try to take off her blood pressure cuff and oxymeter probe (without success, of course, which frustrated her a bit). All of this while she continues to be on several sedation medications, that no longer seem to be doing much of anything for her.

Friday, March 12, 2010

The Current Plan

So, today some of the doctors decided that sitting around waiting for Lynnea's fevers to go away doesn't seem to be working, so they came up with a plan. The plan is to cut back on some of her antibiotics over the weekend and see what happens (because sometimes the antibiotics themselves can cause fevers). If her fever curve improves, or even if it stays the same, the assumption will be that she is not actually fighting an infection, but if her fever curve gets worse, they will know that she really is fighting something off, and hopefully it will then show up on some of their cultures, so at least they will know what they're fighting. If her fever curve stays the same, they will also consider giving her a one-time large dose of steroids because sometimes this helps get rid of persistent fevers in cardiac patients. Also, she is on the schedule to have her aortopexy on Tuesday; I don't know what time, but I would assume that she's first case in the morning.

Thursday, March 11, 2010

Searching for a Source of Fevers

The results of the CT scan yesterday did not give a lot of insight into the source of Lynnea's most recent fever spikes (overnight last night she spiked to 102.5, but she's been right around 99.8 most of the day today). It showed that there is still a bit of fluid around her left lung, and there is still some fluid and/or inflamation in her chest around her incision site. These things looked slightly improved from her last CT scan, but the doctors on the infectious diseases team feels that these are still the most likely sources of the infection. There was some brief talk this morning about possibly doing a spinal tap to rule out meningitis (simply because this is one of the few things they haven't tested for yet), but in the end everyone decided against it for now. There is still no plan about what to do next; we still don't have a time frame for when Dr. St. Louis might feel comfortable doing surgery on her.

She had another rough day as far as sedation goes. She was awake and crying much of the day. This, as always, was hard to watch, but in some ways it was nice to see some of her personality show through the sedation. She continually showed me her arm, which had a "no-no" on it (a "no-no" is a Velcro splint that they put on kids' arms to keep them from bending their arms, or to keep them from pulling on their IV's), and she desperately wanted me to take it off. Eventually I gave in and took it off because I couldn't handle her begging any longer. This seemed to mildly please her. I believe I also saw her sign "all done" to the nurse when she suctioned her because Lynnea wanted the nurse to stop. She also enjoyed sucking water off from a toothette (a mint flavored sponge on a stick) with me this afternoon, and even wanted to try to put it in her mouth herself (she couldn't quite manage to get it in there around the breathing tube, but that didn't stop her from being very determined to try to do it herself).

Wednesday, March 10, 2010

Surgery Postponed

Dr. St. Louis decided to postpone Lynnea's surgery this morning because she had another fever late last night. So, today she is going to have another CT scan to look for sources of infection.

Tuesday, March 9, 2010

Still Planning on Surgery in the Morning

Lynnea is still on the schedule to have an aortopexy in the morning. Dr. St. Louis is going to lift her aorta off from her left bronchus, so that her bronchus will hopefully open up, and we can then eventually get her off from the ventilator. He is also going to do a decortication of her left lung tomorrow. He is going to remove the extra fluid and inflamed tissue from around her left lung. He expects that this could take a few hours, and that there could be some bleeding involved.

Overall today Lynnea had an OK day. She had an episode of dropping her blood-oxygen saturation levels this morning into the 40's without any clear reason, but managed to recover with some extra oxygen support. Sedation was an issue this morning, and after giving her significant doses of Ativan, Dilaudid, and Precedex, the doctors decided to give her a dose of Chlorohydrate, which worked. She was on Chlorohydrate last week, and she liked it a little too much (drops her blood pressures, and tends to be overly sedated on it), which is why they had taken her off from it over the weekend. The one time dose did the trick and she had a pretty quiet day otherwise. She continued to run a low grade fever, but nothing high enough to prevent her from going to surgery in the morning (at least not at this point, technically she could still spike overnight, so surgery is not guaranteed).

Monday, March 8, 2010

Sedation Issues (Again)

Lynnea's fever was up again today. The sputum cultures that were sent yesterday tested positive for signs of infection, but the specific infection hasn't been identified yet (so we don't know if this is the same bacterial infection as before, or if this is something new). During afternoon rounds the plan was still to do surgery on Wednesday morning. She was much more awake today than she has been in the past week, and very easily agitated. She spent much of the evening crying and trying to pull out her breathing tube. Hopefully the doctors will find a mix of sedatives that will work for her soon.

Sunday, March 7, 2010

More Fevers

Lynnea spiked a fever again today, higher than yesterday - 101.5. Cultures were sent to check for infections again. This morning in rounds Dr. St. Louis said that the low grade fevers that she's had over the past few days would not prevent him doing her aortopexy on Wednesday; we'll see if he still feels the same way tomorrow. They were able to completely take Lynnea off from her Epinepherine today, so for the moment she is not on any medications for her heart function. She was not as well sedated today as she was yesterday; she woke up crying several times today (still crying silently because of the ventilator tube down her throat), but calmed fairly easily.

Saturday, March 6, 2010

The Fever Returns

Lynnea's temperature went up again this afternoon to 100.6. This is very discouraging. This morning her right lung didn't sound as good as it has sounded over the past few days, which is also a bit discouraging. On a slightly positive note, she seems to be doing OK with the decreases in her sedation; she moves a little bit and sometimes tries to open her eyes, but is still very sedated most of the time.

Friday, March 5, 2010

Surgery Tenatively Scheduled for Next Wednesday

It sounds like Lynnea might have surgery next Wednesday, but as we all know, plans could still change several times before then. She ran a low grade fever for a while today again (99.6) but only for a couple of hours, and it came down on its own. She was taken off from Milrinone (a drug to help with heart function), and they decreased her sedation medications again. She is still adequately sedated, and I think the decrease in sedatives is a good thing.

Thursday, March 4, 2010

Surgery Likely Next Week

Lynnea remained fever free today, and her white blood cell count remains down. Dr. St. Louis has not scheduled surgery yet, but he is hoping to do her aortopexy early next week -- he is trying to coordinate with another doctor on this because he wants to do another bronchoscopy at the same time he does the aortopexy, so we are waiting to hear when they will both be available to do this.

There's not much new with Lynnea today. They decided to add Zyprexa to the mix of medications she is on, which is something that I was very hesitant about, but in the end conceded to allow them to do it. Zyprexa is an anti-psychotic medication (mind glue) that they felt that Lynnea would benefit from because they are afraid that she has developed delirium related to long-term sedation. The problems with this are that there is no good assessment tool to use to diagnose delirium in infants, and Zyprexa is a relatively new medication (and very rarely used in an infant population) so very little is known about any sort of long-term side effects, particularly with infants (no one has any clue what this drug might do to a developing brain), but the negative side effects of leaving potential delirium untreated seem to warrant the use of the medication.

Wednesday, March 3, 2010

Vague Talk of Surgery Plans

Lynnea was fever free most of the day today. She spiked to 99.9 briefly (for an hour or so) this evening, but her temp is back down to 98.9 now. Her white blood cell count was also down again today. The doctors seem to believe that she is probably getting better, and there is talk of possibly doing the aortopexy that she needs either late this week or sometime early next week.

Tuesday, March 2, 2010

Just Another Day at the Hospital

Nothing new with Lynnea today. She spiked a fever this morning (101.1) but her temperature has been down most of the day. Her white blood cell count was down again today, which is good.

Monday, March 1, 2010

It's Been Three Weeks

It has been three weeks since the last time I was able to hold Lynnea. This is the longest that I have ever had to go without holding my baby. Overall she had an OK day today. Her white blood cell count is down again today, which is a good sign. She spiked a fever overnight last night -- it reached 100.5, but she has not had a fever yet today. She had a lung profusion scan this afternoon. It showed 87% of her blood flow going to her right lung, while only 13% goes to her left. This isn't good, but it is not much different than the scan they did back in December. Nothing else new today for Lynnea.

Another family lost their child unexpectedly this evening. He was a little boy named Riley, who had just celebrated his fourth birthday. He had been here in the hospital for nearly a year waiting for a heart transplant. The Berlin Heart that was keeping him alive failed unexpectedly. Please keep his family in your prayers.